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Advocacy: Catching Legislators at Home

Thanks to a new communications effort by MDA’s Advocacy Department – the Fly Out -- members of Congress are getting to hear the concerns of the MDA community first-hand and on their home turf.

The MDA Fly Out, which has been taking place around the country throughout August, capitalizes on Congress’ annual recess when most legislators head to their home districts and meet with constituents, either one-on-one or at public meetings.

The Fly Out (the opposite of a “Fly In,” where people travel to Washington D.C. to talk to their legislators) features individuals and families affected by neuromuscular diseases, and MDA field staff, clinicians, researchers and sponsors.

Each Fly Out meeting was carefully planned by the Advocacy staff in Washington. Local teams were provided with fact sheets about MDA health care and services programs available in their specific region, as well as fact sheets about MDA itself. They received a community issues summary, talking points and information about legislation being considered in Congress that’s important to the success of MDA-supported research efforts.

Annie Kennedy, MDA vice president for Advocacy, said one goal of Fly Out sessions has been to persuade legislators to support and co-sponsor the SMA Treatment Acceleration Act of 2009 (H.R. 2149 and S. 1158). The act would provide federal support for developing treatments for spinal muscular atrophy.

Other topics broached by MDA Fly Out teams include thanking members of Congress for their support of the ALS Registry Act, the Genetic Information Non-Discrimination Act and the MD CARE Amendments of 2008. Many meeting participants have shared their concerns regarding health care reform and the need for improved federal resources for adults living with neuromuscular diseases. Some younger visitors with neuromuscular diseases told their legislators about their experiences at MDA summer camp and the other services that MDA provides to them and their families.

Although recent news reports have focused on the rambunctious public meetings where legislators got an earful from some constituents about national healthcare reform proposals, the Fly Out teams that did discuss health care reform said the tone of the talk stayed civil, even when their opinions differed from those of their legislators.

“We’re extremely pleased at the results of our Fly Out efforts thus far,” Kennedy said, noting the program will continue through the end of August. “The great majority of legislators we’ve spoken with have assured us they’ll support the SMA bill. Of equal significance, for the first time many of them are coming face to face with families who need their help, the MDA teams working to make it possible and the researchers who are leading the effort to discover treatments and cures for neuromuscular diseases –- right in their own backyards. They’re seeing, hearing and gaining understanding.”